Despite heart defect, Minick dances on with support of friends and family

Sophomore Ellie Minick puts her heart into everything she does, even it it tries to prevent her from doing so.

Since she was born, Minick has been dealing with the heart defect of Double Inlet Left Ventricle (DILV), causing her heart to only have one working pumping chamber in the absence of two others. She has gone through three open heart surgeries and continues to have frequent p`rocedures to try and assist her in fixing the effects of this defect while balancing her academic, social and athletic life.

At the age of four, Minick underwent a Fontan procedure which placed a small tube known as a conduit into her heart to act as an artery, assisting in pumping blood correctly. Minck said the health concerns caused by this procedure and DILV began to impact her life in middle school.

Alongside DILV, Minick said that she has had to take into account other health concerns caused by it. Staying healthy for her means being able to notice the small things, which she began to realize something small in middle school caused by her Fontan procedure she had at four years old, which placed a small tube known as a conduit into her heart to act as an artery to assist her heart in pumping blood correctly.

“I’ve had a really good quality of life, good friends, there was nothing affecting me too badly, I had an annual appointment with my cardiologist, but in 7th grade I noticed that my ankles were really swollen and I texted my mom,” Minick said. “The day after we went to the hospital. I got diagnosed with protein losing enteropathy (PLE). It’s very complex and only about 13% of the fontan patients actually get it, so it’s not new but it’s new enough to where they don’t know how to solve all of the diseases and symptoms that kind of come with it.”

Minick said these small signs of the effects of her procedures can be a bit concerning or confusing to distinguish, especially in her dance life, as she is a member of the MHS dance team, who has supported her through it all.

“I want to stay involved, but there’s always that constant worry in the back your head with everything that happens with my body,” Minick said. “It’s not just common concerns like ‘oh, I see bruises’, it’s, ‘oh my chest hurts a little bit.’ If my ankles are swollen after dance, is this just because I was working too hard, or is it because of something that’s greater? At dance practice they’re all so supportive of (my concerns) and the team is always there for me.”

Minick has had to deal with both inpatient and outpatient protein infusions through an IV, adding on to her daily medication routine. Recently, she has had two stents put into her arteries to assist in blood flow. Minick said her health situations have challenged her ability to manage everything, which can be hard to explain to others.

“One of the craziest weeks for me was when I had dance tryouts, student government elections, and then at the end of the weekend a liver biopsy,’ Minick said. “I think doing stuff like that is so hard is that people are unaware. They don’t really like know what’s going on because I don’t really show it, but they’ll see all these bruises on my legs and they’re like, ‘oh wow you’re so clumsy.’ The thing that they don’t know is that I’m on blood thinners and that I really am trying, and it’s kind of hard.”

Since birth, sophomore Ellie Minick has had a heart defect. Minick has endured three open heart surgeries.

Minick said she commonly faces these issues of explaining herself to others, especially when she doesn’t want it to affect they treat her. She said the most difficult part is that at times people fail to understand her condition is a continuous battle, which will eventually lead to a necessary heart transplant at some point in her life.

“It’s hard to describe to people what it’s like,” Minick said. “I’ll heal, but my bigger heart problems will still be there. I’m still taking all this medicine, I still have this disease. The little problems are solved, but the big problem kind of remains. Obviously I don’t want people to treat me like I’m sick. I’ve been dealing with this since I was just a baby, it has always been a thing in my life and I’m so used to it. ”

Minick said that the support she receives from others makes things a lot easier for her, especially with that assistance is from her teachers, especially when her heart can make it difficult to carry out her schoolwork.

“I’m taking Honors English and APUSH, which are pretty challenging with the work I have to catch up on, and even the teachers are understanding,” Minick said. “This has been the first year where they’ve come to me and tell me not to worry about it, and that we’ll get through it. Most importantly, they will tell me I care about you, and I care about your health, which is huge for me because when they say they care about my health, they really care about me and not getting that one little essay done because that’s not that’s what’s really important.”

Throughout her experiences, Minick said her strength comes from her community and the healing she feels from being around others. Although she may have these conditions throughout her whole life, her family and friends intend to be there every step of the way.

“The main thing that gets me through all of this is family and friends,” Minick said. “Especially having my brother and sister in the school, they’ll come up to me and ask how I’m feeling, sometimes they’ll carry my backpack for me, or help me out in school and get my papers. Even when I miss things, they’ll always check in with me, and even when I’m not feeling well, I feel better just because of their presence when they come to visit me.”

Minick lives her life with the goal of staying positive and worry-free throughout the ups and downs of her medical complications. Overall, Minick said her motivation stems from the mentality to move on despite any fears that have developed.

“I know it’s going to get better,” Minick said. “My motto is ‘it is what it is’, and even though it seems negative I don’t mean it that way, it really just is what it is and I’ll get through it. I have friends and family that constantly love me and check up on me. Even though I know sometime I’ll have to get a heart transplant that we’re pushing off as long as possible, I know I will always have them with me.”